The ongoing saga of being a ongoing father of two - one with autism and one who died for 20 minutes.
From pre-birth, birth and through those difficult toddler years.
It's definitely a life changing event going from singleton to parent.

Monday, 26 September 2011

First point - Emily never has a sleep during the day. She hasn't for a long time. If she does, she's ill.

Right, now that's out of the way, we went shopping yesterday and when we came back we were all in the living room - myself putting together purchases and Sue and Em lounging on the settee. Next thing you know, Em's fast asleep - it's 6pm.

My first thought is she's ill, she's not well, she's tired - i.e. she needs to sleep. Previously when she's gone to bed hella early she's slept all the way through because she's ill, she's not well, she's tired, etc.

At this point, we had two obvious choices - treat it as a nap, wake her around 8 for dinner and see where we go from there OR treat it like she's out of sorts and needs to sleep and wake her normal time tomorrow.

We went for plan B. Big mistake.

Around midnight we could hear chatter from her room and immediately knew that plan B was the wrong plan. SOMETIMES, she'll wake, chatter to herself and go back to sleep.

Knowing full well she hadn't eaten since around 3pm, I figured her chatter / fall asleep would work better if her stomach wasn't grumbling. I went downstairs and made her a sandwich which I took in to her. Even though she'd been asleep for 6 hours and had woken, she wasn't all that active - still laying quite docile in her bed and only really turning when I entered the room.

I gave her the sandwich and a drink, fully expecting at this point that both her and I would be in a state of restful slumber by 1am.

Ha.

Come 5.30am when Sue got up to go the loo, I have it on good authority the party was still a rocking. Like a lightweight college student I was fully passed out next to party girl #1 who wouldn't take sleep for an answer.

This all changed at 7am when it was time to get up to go to school / work. Emily was fast asleep, having had probably about an hour's sleep in this spell. Needless to say, all attempts at getting her ready were met with crying and what I imagine to be a childlike sense of "what the hell? I just got to sleep." Needless to say, we couldn't send her off in this state - and all parties (council transport, Dragonflies and Helen) had to be notified this possibly ill girl was going to stay at home... and sleep?

If this episode has taught us anything, it's that even if Emily is ill we need to err on the side of caution and wake her, ensuring that she doesn't work herself into a new time zone by accident with her new body clock. Jet lag's horrible when you're travelling, let along when you're not.

Wednesday, 21 September 2011

If she wants to be picked up, she'll normally get in front of you and put her hands up. If you're lucky she'll utter something obvious like "Up" and just make it incredibly obvious she wants to be picked up.

Lately, she's been walking BEHIND me. At first I really didn't get it, until I knelt down to tie my shoe and she hopped on my back.

Ah... penny fully dropped, I realised she's now wanting a piggy back, instead of being picked up in the front. I wonder if she's grown tired of my face and is much happier to look at the back of my head. Or if she sees this position as a happy in-between from the full on sitting on my shoulders.

Whatever the case is, her piggy back is not a proper piggy back in that she has no concept of actually holding on. It's more like riding the bucking bronco at a rodeo, but in this case I'm trying to keep her from falling off.

I discovered last night at Asda that the Emily Piggy Back (EPB) also makes it quite impossible to do any shopping as all available limbs are being used to ensure that Emily stays put.

Got Em to Dragonflies on time this morning. The transport (aka a minicab with a driver and a council "escort") arrived at our house later than it should have (about 8.40am instead of 8.20 - 8.30am), but we got to Dragonflies with time to spare.

It transpired the minicab dropped us at the wrong gate, so Em and I had to wait for the school to properly open before we could dart through to the Dragonflies room. Small inconvenience and teething issues with it being a new process.

I quickly found out, however, that our schedule was not what Dragonflies had in mind. I was under the assumption I would be there from 9-10am, to ensure Em didn't have a meltdown and then I could quietly melt away and be in the office by about 11.30.

As it transpired, they were expecting us at 9.45am for an hour, after which Emily and I would leave.

Oops.

As it was, everything was fine and Emily had a full morning of schooling. I, meanwhile, was holed up in the staff room / library where I was able to crack on with some work on my laptop.

Thankfully, my woeful scheduling enabled me to have a half hour chat with Alison, the speech and language therapist. It was quite a good chat and I filled her in on Emily (as Em's "chart" hadn't arrived from the Robin Hood Lane Clinic yet), and Alison let me know how the next year will work with her and her assistant.

On the way back to the minicab the escort asked if Em had been coming to Dragonflies long. What I WANTED to say was "you're her escort, how long have you been escorting her?" but instead I chuckled and said something along the lines of, "today's her first full day, actually." I figure you have to keep on the right side of someone who's going to be responsible for your child.

Monday, 19 September 2011

Today marks the end of an era for Emily. The carefree toddler days where school is a distant memory and play, eating and sleeping are the order of the day.

Starting tomorrow, she starts to become a Dragonfly. Sure the first couple of days are light touches, but by the end of the week she'll be as full time as any other child her age (i.e. 3 hours a day).

I think Sue and I feel a pang hidden deep down that our baby is growing up so quick. Sure it's only toddler school, but give it a year or so and she'll be in Kinder Garden and then Grade One (or similar UK equivalents).

Still, come December we'll have three school-free years of baby number two to look forward to before s/he has to go to school so we shouldn't lament too much.

Thursday, 8 September 2011

We had the home visit today from Dragonflies. It gave Em's key worker and the head Dragonfly a good chance to get to know Em, as well as let Sue and I know more information about the forthcoming year.

We were left with a couple of pamphlets to review, as well as a couple of forms that need filling out.

Em starts on 20th September for a 30 minute induction. The next day she'll do an hour. If all is well from that point, she'll do the full morning from the 22nd.

The one thing I was worried about was her toilet training status. Thankfully, with Dragonflies it's ok if Em still has no control. We just have to send along nappies, wipes and emergency clothing. I'd like to think that going to the loo with other children who are actually USING the loo might spur Em on to want to do similar, but in the back of my mind I just envision Em as a middle aged woman who NEVER learnt to go to the toilet. Probably a horrid flight of fancy, rather than a realistic scenario.

The Dragonfliers also asked about various likes and dislikes that Emily has - food, activities, noises, etc.

All in all, it was quite productive and not at all the horrible experience I kinda envisioned a few days ago.

Now, we just wait for Em's first day as a big girl at big girl school.

Lately Emily has exhibited some odd behaviours. Last night on the way home from Helen's, we had to make a detour from our normal journey home to get some food at Sainsbury's for dinner. We took the normal route home, and then made a right turn where we'd normally go straight.

On turning right, Emily started sobbing and mumbling what I could only make out as gibberish and then... she stopped and let out a fog-horn style scream.

What I get from this is she's trying to communicate through the gibberish and when I couldn't understand her, she got frustrated enough that she let out the scream. I tried to console her by saying, "it's good you're talking and communicating, but I can't understand you!" Obviously this worked like a lead balloon.

I felt like Captain Picard in that famous Star Trek Next Generation episode "Darmok" where the universal translator failed and he was left to his wits to understand the Tamarian captain Dathon, who keeps muttering incomprehensible gibberish "Darmok and Jalad at Tanagra".

Picard had to persevere and finally found a way to communicate; I just had a bellowing child who was only consoled by singing to her. I guess in a way, although I didn't understand what Emily was trying to communicate, I at least knew how to console / distract her... and no phasers were needed.

Monday, 5 September 2011

We have a home visit from Dragonflies this week, in preparation for Emily starting there later this month.

Neither Sue nor I are quite sure what to expect, but in the back of my mind I keep assuming it'll be a quasi "are you fit parents" meeting or a "should we take your child away" meeting. Obviously it's won't be, as they're not child services, but I imagine there might be a small amount of them looking around the house, jotting stuff down and tutting.

Talking about it jokingly today, someone mentioned we should try and cook some bread or similar to give the place a nice homely smell. That and get the potty out of the kitchen.